For those who care for someone with Parkinson's disease
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My husband sat on the couch twice this morning. Well once when I told him to, but didn't realize he had problems getting up. The second time he did it himself and couldn't get up. He has a walker but it's a high one as he's over 6 feet tall and 210 pounds. He couldn't grab both handles and have the strength to pull himself up, but could grab one handle. I then had to pull his other hand and get him up. Geez. I'll probably feel it tomorrow. The kitchen chair and 2 other chairs have side handles and the recliner is easier to get out of for him. He never sits on the couch and doesn't know why he did unless he was bored with the other chairs. He also moves chairs around in the kitchen. What do you people do with your spouses? |
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| Early in my husband's disease I bought him an electric recliner. It helps him to get to a standing position. It also is good for raising his legs when he is sitting reducing swelling in his feet. I wish I had bought one with heat and massage. |
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Thanks, I know about those chairs and my older sister has one and I know several people who have them. If it comes to that we'll have to get one, but I am thinking that if we had started early like your spouse, then maybe the mobility to get out of a normal chair would be reduced. He doesn't need to stiffen up in that way, so moving around and getting up the normal way helps to keep those muscle limber. What happens if you go to a restaurant or somewhere they don't have those lift chairs? I find the chairs without side handles in restaurants are difficult for him. He has to lean on the table and side of chair for support. We have started to spread his pills over 2 hour periods for 8 times a day instead of 4 times a day. It might be too early to tell if it hinders the mobility, as we aren't reducing the strength, but just the way it is taken. We are trying to reduce the sleepiness that the meds cause. The doctor said it might not help as just an experiment. Anyway, thanks for your input. |
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Several years ago we split our pill dosage as you are doing to combat the sleepiness. For us, it helped, but taking pills every two hours is very hard, even with the alarm set on our cell phone. And splitting all of those pills results in some waste, since you get lots of little powder pieces in the pill box/on the counter/in the sink. So I don't think the dose is 1/2 of what he was taking, exactly, because our DIY splitting is imperfect. As the years have gone by, the benefit of taking smaller doses more frequently has lessened and now we fall asleep anytime. It could be right after a dose, or 30 minutes later. I think that if we had not split the doses up into smaller ones, though, the sleepy factor would be much worse. It is very hard to try and coordinate meals around a 2-hour pill schedule, as opposed to a longer one, particularly if your loved one is a between-meals-snacker. |
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My husband also has an electric recliner..It's great for raising his legs for a good sleep. He can get out of it without the lift mostly. Every once in awhile he sits on the couch..Why I don't know but it is extremely difficult to get him up. Sleepiness is such a problem he is snoozing now before bedtime...It's amazing how tired he gets but that is PD. |
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| Linnie, we share the same problem. I am 4 feet 10" tall and my husband is 6'5" tall. I have become creative over the last 15 years at getting us out of pinches when he decides to sit in the worst choice of furniture. You said you have a dining chair with side arms. Take it to the couch and turn it in front of him so he can use that (the side arm) level grab bar. You need to sit in the chair to hold it down. Once he is up, just stand up and turn the chair so he is grabbing the top of the chair. Then pull his walker in place. Now don't laugh....but just wait until he uses a friends guest bathroom toilet in a little closet with no grab bars. I had to squeeze in with him, squat, and had him put his hands on my shoulders while is raised up. It was either that or call the paramedics on my cell phone to rescue both of us....stuck in a basement level guest water closet where no one could hear our shouting. Quelle embarrasment. |
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Oh, my God. Moon (I wish I knew your real first name) Anyway, that was funny, but not very if you are in that position. So last night my husband fell out of bed last night turning over after sleeping 2 hours. I didn't even give him the Seroquel for hallucinations to make him sleep better (hopefully as I because of his behavior yesterday and I didn't need added stress. He got up okay and I got him settle back down, but during the night he slept (who knows) on the recliner part of the night. I was thankfully sleeping in the bed and didn't hear him get up. Anyway, after taking his 7 a.m. pill he started getting dressed by himself and so I let him to see how far he got. Well he put the shirt on backward, so I helped him, but he told me to close the door on the bedroom. I went into the living room. He came out later with his jogging pants on backwards, but his socks and shoes were on. The pants are still on backwards. lol He also came out carrying a briefcase which we only use to carry things to the accountant for taxes once a year. He went to the hall closet and got his coat on. (earlier he was trying to ask me something and looking back I think he wanted to know if we were going anywhere and when I didn't answer because I didn't know what he was saying he thought he should go somewhere) Anyway, I said we aren't going anywhere and he took off his coat and came into the living room. During that time he called me a Dumb Blonde. I have silver and blonde hair.......lol. The he sat for a minute and got up and put on his coat again so I left him to zipper up the coat which he couldn't do. He also had my hat on his head.....lol He tried to get out of the front door which had a light guard which make noise if opened (I put on during the night), so that went off, and then he's trying to get out. and saying this isn't funny I tried to tell him once again we aren't going anywhere so he sat on the bench with his head down and I could not get him to move or answer me. Finally got through to him that we aren't going today right now, but maybe later to get some groceries. He took off his coat and came to the living room and heading for the couch, but I redirected him to the recliner WHERE he went to sleep for 30 minutes. He also cries when he gets confused...... Then I got him breakfast but he only ate half and also shaking and in a fog. He is tremoring more since changing the meds administration. By this time it was 9 a.m. so gave him that pill and put in a call to the nurse to explain what is going on. What a day so far........... Could the change in pills make him more confused? It seems to be....... I HATE THIS DISEASE............ I feel so helpless, but trying my best to help him if he only realized it. (I think somewhere he does, but I am getting the brunt of his behavior right now......... 
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I feel better I called the clinic nurse and explained what is happening. She said to continue taking the pills eight time per day and also have him take the Seroquel at bedtime. It is very important to do this so he will settle down about the confusion and hallucinations. She said to give it 2 weeks in order to get him settled down and to hang in there. I feel much better and hopefully tonight and tomorrow is better than today. |
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| Lynnie, Your asking could he be more confused by cutting the dosage and giving it more frequently. While He is getting the same daily dosage in total he is also going through withdrawal from the medication. Before the change he was getting more of a rush or kick in from the medicine because of the larger dose. Now with it more frequent it is seeming to him (his brain and body) that he is getting less. So He's continuously feeling the I need more or lack to him of medicine in his body. It is said that reducing or withdrawing our medicine is akin to heron or cocaine withdrawal. So yes He could be more confused, agitated and jumpy. I can see where He would remark this isn't funny. Many Doctors look at the chart and make adjustments sending Us and our caregivers home without warning signs of or "expected" side-effects. They do us no favors by this and we patients and our caregivers have to deal with everything the change causes to happen. With no heads up of what may could happen. I'm sorry You and so many others patients and caregivers have to go through all this when what 5 minutes of explanation would do wonders for peace of mind. I hope this helps explain things. |
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Thanks that explains many things .I think it was better before we changed but we'll see . The doctor also mentioned a pump thst gives the dosage but I would have to look after that and would he leave it on is another thing What have I got myself into ? I TRY TO HELP THE MAN AND MAY HAVE MADE IT WORSE BUT THE NURSE SAID TO GIVE IT 2 WEEKS SORRY ABOUT CAPS LOL |
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So sorry Lynnie it is so hard... My email is janedcameron@yahoo.com if you want to write. Actually I am going to visit my grand kids and have 2 caregivers for my husband on alternate days I'm worried but I've got to go!!! |
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Linnie, I was expecting sage Al's reply. Dear, of course it is the Rx....it is always the damned Rx. Too little, too late, too much, too soon, too strong, too weak, tohellwithitall. Titrating off a large dose to a more frequent dose sounds like the same amount, but the body sure does not feel it the same. If you drank a bottle of wine over the course of a day would make Parkinsons's easier that day, but if you drank it down without so much as a belch, your would pass out and forget Parkinson's for a few hours. But it would not go away, and at the end of the day your wine cellar would be empty of one bottle, PD would still be an angry issue and you would have a hell of a headache. What seems like dementia, might not be....and if you wrote the same letter and your husband was just a 2 year old....he would still have his sweats backward, and carry his briefcase (full of legos, of course) and put his head down and feel sad he was a bad boy. But he's not, no matter what his age is. He has the devil Mr. Parkinson kicking his ass every hour on the hour. A lesser wife than you would have thrown in the towel and gone howling into the night. But the brave put on a smile, and laugh like backward pants are funny and resolve, this too will pass.......just not soon enough for sanity. My challenge of the month is cause and effect. Dr says stay off wounded foot until healed, and BTW no to all your plans. Next Dr says WHAAAAT. Miss your Superbowl Saturday with your kindergarten, Jr Hi, and Poly High School friends to let your foot heal. NO go, make merry with them from the wheelchair. Tell lies, and tales, and stories and remember the days over 50 years ago like they were yesterday. The guys need to see that they are way better off than you, and you need to see you are way better off than the ones that have died" and Dr #2 was RIGHT. Son took him in the car he went to the Prom in (we still have the 1960 Caddy) and he lasted 5 hours. Now we are breaking the second admonition and going on a Family Reunion Cruise with his older brothers (who claim the do not see enough of him) and lots of nieces and nephews. And our Scrabble partners, so when they all go ashore, we can stay behind and amuse the beast Parkinson. Linnie, my name is Justine, and I am a displaced Mainer in a SOCal life. And I wish I could buy you a coffee. |
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Thanks Justin, I wish we could have a coffee together too. I told my daughter I need a glass of wine but can't due t health problems. She said you need something else. I had a terrible terrible night. I had problems getting the Sequel into him because of the thick salvia which cause it to come out. So I gave him another one. I think what he had to eat before bedtime didn't help. He had some Cheezies and I saw him eating a chocolate bar too. Anyway, I got him to bed and about 2 hours later he rolled over I guess and fell out of bed and hit the table and caused a bloody spot below his nose. Thank God he didn't break anything and able to get up. But then he wondered what the plan was and when I said there isn't any plan except to get back to sleep, he got angry with me. He walked around the house with his walker and wanted help. He was calling for someone and was very rebellious with me and calling be bad names. This isn't my husband and he barely swears. At one point he was yelling 911, 911. The more I tried to calm him, the worse it got, so I left him alone. After 2 hours he wore out and I was able to get him to bed again. He slept about 90 minutes and then up to bathroom about every hour. OMG This morning he was better but still a little confused. I think as you say the meds were acting on him when he fell it made it worse as he was too much awake. I'll have to make sure he is in the king bed better.. When he fell last night I put a comforter by the table and a heavy chair up against the bed which helped. Our daughter comes tomorrow so I'll be getting a little help and hopefully she can take him for a ride so I can do something for myself....... Thanks for your continued support.\ I am so thankful for everyone on this site. Have a good weekend :>  I'll be okay, it's just the things to go through to get there....... I hope for much better day ahead....... The Social worker from the Alzheimer's society is coming this week, to talk about the DAy Away program and getting respite help for me. |